I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Monday, August 11, 2014

Milestones and Statistics

I haven't written in a while. This could mean that there has been so much going on medically, that I have been too busy and full of worry to empty my head here. I am most happy to report that this is not the case.

We have had a summer. A delightful summer, with sand and sunshine, non-medical travel, time with friends and time to heal. It has been terrific, stringing these days together, these days that were hard earned. I couldn't possibly tell you how wonderful it has all been. There just are not words.

Last week, Dan and I celebrated two milestones. We have now been married for 19 years, which isn't one of those anniversaries that most people note, as it fails to end in a 5 or a 0. But, I recognize that our relationship is nothing to take for granted, so I do note the milestone. It is a blessing, not unlike the long summer days that we have been enjoying.

But, like the blessing of our much anticipated summer, our time together has been hard-earned. The stresses on our family have been great, if I might be so understated. I recognize that cancer has forever altered what I envisioned our family. If I were married to that vision, rather than to my husband, I would be bitterly disappointed, and most unhappy. While I could do without cancer, I am most grateful for my husband, our children and the life that we are making every day together. It is not at all what I planned, but wonderful, nonetheless.

The second milestone happened on Wednesday, which was scan day for Brent and Lauren. It was a long day, one that required much mental fortitude, but ended in good news. Brent achieved 'event free 2 year survival' for the osteosarcoma which, if you put much stock in the statistics, is a very, very good thing. While the whole melanoma episode was quite an event, it does not factor into this equation: Brent has not had relapse of osteosarcoma for the two years since he completed treatment, which is statistically relevant.

I have sworn off statistics. Dan and I absolutely should not still be married, if you embraced the marriage numbers. They are pretty bad for the average couple, but are far worse for families with challenges like ours. Statistics, I have long said, do not matter. However, I did find that I was heartened with the news on Wednesday, well beyond the whole "neither kid has cancer" notion. I am feeling more confident as we stretch out the time between chest CT's. I am a firm believer in "whatever gets you through." and if these numbers are helping, well, I may be a hypocrite, but I will selectively grab at the encouraging statistics and ignore the unhelpful ones.

We are in full swing now, gearing up for school which officially begins in a couple of weeks, although Alex is already gone much of the time for soccer and marching band. I am grateful for another span of time to enjoy without much medical interruption. Maintenance treatment for melanoma allows much time for living. And that is what we are doing. We are making new dreams, and alternate plans. Different, we have decided, does not equal bad.

I am grateful for the opportunity to dream, for the relative medical quiet, for the milestones, for all of it.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.